Remembrances of Mom

        On what would have been her 88 birthday, I want to share my memories of a remarkable woman, my mom.  I share this honor with three others Glynn, Charlotte and Jay.  What follows are my remembrance's of her.  So let me start by stating that in general all mothers are special and that I feel that all mothers who raise children with chronic illnesses are very special indeed.  In my world my mother would have been the leader of the pack.

        She was born and raised on the family farm outside of North Freedom Wisconsin where she learned about hard work.  She also spent a fair amount of time on her grandparents farm located in the Sumpter area up the hill from the Badger Army Ammunition Plant.  She learned to knit and crochet from her grandmother something she did for most of her life.  She survived a near fatal encounter with a hornets nest as a child and became afraid of birds after being attacked by chickens while cutting through their enclosure on her way back from the mailbox on her grandparents farm.

            She studied Latin in high school wanting to prepare to study nursing after graduation but this was not to be, she worked for her father as a secretary for awhile in Madison.  This is where she met my father who was in the U.S. Air Force stationed there.  They married when she was 19 years old and by the time she was 21 they had two children 11 months apart.  I have joking referred to the two of us as Irish twins, however mom said that there was an old wives tale that you could not get pregnant while nursing, she said that I disproved that one.  What was unknown at the time was that my older sister was born with a severe hearing loss and then I came along and was diagnosed with classic hemophilia 6 months after birth.  This was not a accurate diagnosis but given the treatments at the time it sufficed.  There was a family history of the disorder two of mom's three uncles had been diagnosis with hemophilia but both died before she was born.  It was her grandmother who originally recommended taking me to the doctor because of bruising around my ribcage.  Little did she know how much that doctor appointment would change her life.  She noted in my baby book that she drove across town afterwards not remembering that she had done so.  Sometime after that they started to notice what was considered behavioral issues with my older sister which doctors at the time blamed on the amount of attention I was getting because of my hemophilia, it was not until a young intern commented to my mother "you know she can't hear" that they realized to what extent there was yet another physical issue with another of their children.

        My father was transferred to Kelly A.F.B. San Antonio Texas in the later part of the 1950's and shortly before her 25th birthday we had our most harrowing experience together.  As was their custom my parent's would check on the two of us before retiring for the night.  On April 15th 1959 they found me gasping for air, it was mom who drove me to the emergency room (ER) at Wilford Hall Medical Center Lackland AFB all the while telling me to breath.  It was mom who carried me to the ER where an emergency tracheotomy was preformed.  It was determined that the tracheotomy was misplaced and I was taken to the operating room where a second tracheotomy was preformed during which my heart stopped and an open heart massage was preformed causing my left lung to collapse resulting in chest tubes being inserted.  Several more times that night my heart stopped where mom witnessed the efforts to start it again.  She recounted the many transfusions the I endured when it appear that I was bleeding faster than they could pump it into me.  That was a long 69 day hospitalization mostly spent in a shared room with other very ill children all of which died, causing mom to meltdown one day asking a doctor if any children every gets out of that room alive.  Well she did witnessed at least one, her own.

        Long before there were terms like "tiger mom's and "mainstreaming" there was our mom.  She made sure that schools treated my sister and I as any other student, of course in my case there were limits to physical activities but our parent's wanted us to live the real world and not be sheltered from it.  Regardless of the grade or the school over the years she'd go make sure that we got a well round education.  If that meant fighting with a school counselor over whether not my sister should or could take a speech class in high school she was always up for the challenge.  Additional, because the military moved us every four years there were new doctors and neighbors to train in hemophilia and teachers to push to accept the fact that my sister could function in a regular classroom.  For a short period of time at the start of my life, we live near extended family members.  So after that time it became necessary to rely on neighbors to fill that void, in many ways they became our extended family and mom cherished many of them to the end of her life.

        My younger sister made her appearance shortly before we moved to Japan in 1962 and it was left to mom to get all of us from San Antonio (SA) to the West Coast to ship our car.  So by herself she drove a 1959 Ford with no power steering, no power brakes, no air conditioning and a three on the column manual transmission and no power clutch from SA to the San Francisco area with three children one of whom was not even a toddler.  I remember the car breaking down near or in El Paso which she had to deal with all the while keeping us all in line.  And then there was the long flight to Japan that she had to handle alone on Pan Am.  Our first house in Japan was in an American compound off base with a huge kerosene heater in the middle of the front room,  And the water truck from the base supplying drinking water which the women had to run out with buckets to fill when they showed up.  What came out of the faucet while filling the bathtub was sometime amusing to me but not always to my sister.  It was while we lived in this house that my youngest sibling made his appearance.

        In 1966 we were living in Wichita Kansas and I was in the hospital for a bleed when mom showed up unexpectedly only to tell me that Dad had been injured at work.  He was a crew chief for an F-105 and was hit by a fuel truck while walking away from the plane as it was starting up.  The accident broke his back and he was in traction for weeks and a back brace for a long while.  Eventually he was sent to Wilford Hall (1968) to have three of his vertebrate fused, mom accompanied him with our two younger siblings.  It was the one and only time I remember being left by both parents with neighbors for an extended period of time growing up.  I know that my dad had to go before a medical review board to fight to stay on active duty after the surgery.  Upon winning that fight he went to Southeast Asia for the last time the year was 1969.   

        In the early 1970's while we were stationed at Randolph AFB and my older sister and I were deemed old enough to watch our younger sibling and to take on some of mom's chores around the house.  Mom went back to secretarial school to improve her shorthand and typing skills.  Watching her type was something amazing to behold, if my memory serves me she could type better that 120 words a minutes at her peak.  After completing her courses at Lee Business School she got a civil service job on the base as a secretary.  Later she transitioned to word processing and final became a supervisor of a word processing center.  In the late 1970's mom finally went to college earning an Associates Degree in Computers and went on to work as a technical support person at Fort Sam Houston in San Antonio before she retired.

        In 1979, she got to watch her eldest son get married.  I am sure that this was both a moment of pride but also filled with great trepidation as I stepped out into the great unknown that was my future.  In 1983 the first of her grandchildren was born and in 1986 her husband was diagnosis with inoperable prostate cancer and given one year to live.  Unknown to her was my diagnosis of being HIV positive, it was not until 1994 that I disclosed this fact to her.  After a period of adjustment she began to educate herself on the topic and became the HIV/AIDS educator for her chapter of the Lions civics society  

        In 1989 she lost the love of her life to cancer at age 55 and yet for the most part she did what she always did, she put one foot in front of the other and moved forward.  All be it never really recovering from this loss.  She went on to finish dad's term on city council and then was elected to a term of her own,

        She moved to the Los Angeles area to be near her daughter and take care of her two grandchildren living there. One of her great joys were having her grandchildren with her during the summer.

        All in all a full life well lived.  I miss our weekly talks but I still hear her voice in the lessons she taught me.

Mom with her twin great grandsons.

If Gene Therapy is the future of Hemophilia care, are we planning for it?

As a longtime advocate for curing all bleeding and clotting disorders (for the sake of this article I will be limiting myself to hemophilia B), I have started wondering if we have spent enough time thinking about the next steps as we are moving into the age of gene therapy becoming a reality. I first want to define what I think a cure is for you.  I have always defined it as a single treatment that provides the coagulation factor the person needs to a level that would fall within the normal range when tested for periodically over the life of the person being treated.  In other words, a once and you are done forever, vision of a cure.  Given where treatment started for me, I could make the case that treatment today might seem like a cure with the availability of long lasting clotting factors and prophylaxis treatments.  But it surely does not meet the first criteria of a cure, that being a single treatment.

But, now we have the promise of gene therapy where a single treatment gives the patient the ability to produce the clotting factor themselves.  There are several outstanding questions to be answered by way of clinical trials.  They are all important questions to be answered but several stand out if this is to meet my definition of a cure.  The first is the level of Factor IX to be produced and the other is persistence of that level.  Please do not get me wrong on these points, if gene therapy can move a person from severe hemophilia B to a level where they are considered to have mild hemophilia B and the level persist for years, this would be a great step forward.  I am only noting that it does not meet the standard of a cure that I previously defined and only time will answer the persistence question.  If persistence of the clotting factor is not forever, then what is the possibility or probability of there being another vector available for gene insertion (note: the term vector is used to define a virus that has been hallowed out of its normal internal biology to carry new cell instructions to produce the clotting factor in a cell, currently liver cells are targeted by these viruses. Once used the body's immune system prevents additional uses of the same virus).  All of these issues and points have been thought about and discussed for several years now.  But there are several questions that do not get asked or discussed with any frequency which is the topic of this blog.

The first concern is the possibility that not everyone who is treated with gene therapy will achieve factor levels in the normal clotting range.  As noted before moving someone from the severe form of hemophilia to the mild form, (which is only a function of the percentage of clotting factor in their blood) would be a huge step forward in treatment. But what if this advance could also imperial that individual in the long term?  We as a community have invested years of teaching people about hemophilia and how to advocate for their needs in a medical setting like the Emergency Room (ER). We know from this long record that people with mild hemophilia are the hardest to reach because some do not know they have hemophilia, because they never had a problem.  If they do know most of them do not understand just how serious it can be for them in an ER because they do not have a problem with hemophilia day to day.  So let's say we treat a child at age five who was born with severe hemophilia with gene therapy and they get a result of a 40 % Factor IX level, which is good but not in the normal range, so they would have mild hemophilia by definition.  They never have another issue until a car accident sends them to the ER at age 20, do we think that this person would have any understanding of what hemophilia is, and what their health care needs might be at that moment?  We know today that the people born with mild hemophilia are more likely to have a very negative outcome even death when compared to their peers born with severe hemophilia in an ER setting.  This is just a function of having the right information and sharing it with the medical professionals.  It is the knowing how and what to advocate for at that moment that can be determinate of the outcome.  Are we prepared to keep the educational efforts going over those fifteen years for people who may not really see the need for keeping informed about hemophilia. The reality is that even with a robust educational program we will see people that had severe hemophilia die with mild hemophilia because of a lack of knowledge and are we prepared to face that fact?  I would hope the answer to that question is no.  So the question is how do we continue to provide the educational sessions to a community that might not see the need to remain a community day to day unlike now where there is a strong community.  We actually had this event where the hemophilia community was strong and active until the introduction of clotting factor and the "golden age of hemophilia" occurred, then we saw strong chapter organizations become a shell of themselves because no one saw the need.  That is until the early 1980 when HIV/AIDS woke us up to the fact that we continually need to participate, educate and advocate for our own needs. 

The next concern is generational, given the genetic probability that each child born to a carrier of hemophilia has a 50/50 chance to either have hemophilia if they are male or to be a carrier if they are female.  All female children of a hemophiliac males will be carriers themselves.  It may be necessary to setup a genetic registry to be passed from generation to generation about hemophilia in the family as we move towards a cure.  We know today that about 30-35% of all new diagnosis's claim no family history and some additional testing shows some are new mutations either to the child or the mother.  However, we also know that hemophilia can be hidden in a string of carriers across several generations before a male shows up with hemophilia, strictly because of the probability factor.  In my own family there is a history but it jumped one generation even though there were two males born to a carrier, neither have hemophilia.  If it had gone one more generation the possibility of anyone knowing the history would have been very remote.  Regardless of the factor levels produced by gene therapy the underlying genetics of the individual will not have changed so we may see more carrier offspring of men who had hemophilia than in past generations. Due mostly to improved treatments and hopefully avoidance of medical mishaps like HIV.   Most will live a coagulation normal life and may not have any understanding of what he is passing on to his daughters, because he himself may well not have the information of what it is to be a person with severe hemophilia.  

The final question is persistence of gene therapy and this maybe a question that only time will answer.  How long will gene therapy persist in the body, years, decades or forever?  We know today that the liver can heal itself over time after an infection like Hepatitis C is treated and cured if the damage is not to extensive.  So using this information and hypothesizing that liver cells infected by the gene therapy vector may well decrease over time causing a slow return to the previously normal level of clotting factor, in my case that would be less than 1%.  Which would mean a slow return to having a severe form of the clotting disorder if no alternate vectors are available.  So how do we prepare for this possibility, where someone returns to being severe after years of not needing treatment?  Will we still have current day treatment available in that future after decades of not needing them?  Will the educational programs and the foundations that provide them today still be around to inform them about their hemophilia if this possibility should occur?  How do we prepare for something that might not occur but if it does could be a real problem for everyone affected.

I want to be clear, I am not diminishing the effect or casting doubt on gene therapy as a treatment, to the contrary I have tried to get into several research programs for gene therapy because I think it is important to find the answers to some of these questions for future members of the hemophilia community.  I also do not want to see some of the same mistake made in the past repeated because we see a bright new future without hemophilia.  I recently started to wonder what happens to our Hemophilia Treatment Centers (HTC) when we have a bunch of mild hemophiliac running around that do not have problems day to day for years but might well need their expertise in some future life-threatening event.  If we as a community do not see their value to us under this premise, than how do we plan to maintain them over time for the eventuality that we do need them?  I do not have all or any of the answers to these questions.  But I think it is important to start to ask them so we as a community can have a conversations about planning for this future.

"Silence = Violence" This phrase struck a cord with me!

Over the course of several weeks I have been writing down a few of my thoughts about current events, never quite sure where this task would lead me.

I happen to be watching ESPN one day when they aired a show from the South Side of Chicago's YMCA in conjunction with The Undefeated, where sports, race and culture intersect.  I had to look that up.  While watching as a 61 year old white male in American society, I began to wonder if I could relate to the subject matter, or what if anything I could do that might have an impact in the area of race relations. When one of the host used a phrase "Silence Equals Violence," that struck a cord with me.  That cord being you can relate, and anyone who has ever been ostracized by the majority can relate, to the fear, ignorance and misinformation.  In my case it was about HIV in the early 1980's that caused me to distrust most people outside of my inner circle of family and friends. Something which to this day has an affect on who I let into my immediate social circles.  For most readers, this might not seem like a viable connection between the two issues and they may well think this is a stretch for me to be able to relate the two, but here goes.

The links between my experience and the issues raised by the people of color living in depressed urban areas of this country is the fear, ignorance and the general indifference that is caused when the majority chooses to remain silent on any topic that does not affect them personally. Even when they think or feel what is going on is wrong.  Their silence leaves a vacuum which allows other voices to rush in to fill it with fear and ignorance.  In my case, it was the so called religious leaders that stated HIV was God's punishment, and the news media telling us night after night that first responders were afraid to touch someone with HIV or morticians were unwilling to handle the body of a deceased person with HIV. Finally, the person who should protect the rights of any minority, the President of the United States, Ronald Reagan, added to this fear by stating that medical experts had not definitively found that casual contact was safe as late as 1985.  So I can relate to how it feels to hear all of this negativity being pumped into the universe about you and seeing few coming to your defense.  Add to this that you might not be at a point in your life where you want to draw attention to yourself under these circumstances.  In reality, it is hard to put yourself out there with so much negativity directed at you and the uneasiness of not knowing if anyone will stand with you.  I have been there and it is a horrible place to be for those who have never been in such a place, I hope you never find out.  You might well imagine what it might be like to be in a place where you feel helpless and exposed, but never really comprehending what a prison this environment can be without having experienced it for yourself.  Only when I got to a point where I felt I had nothing else to lose was I able to truly break free of this bondage and find my voice.  Some might conclude that these were only words, why would you let them handcuff you so? Words have a way of turning into deeds. Within the hemophilia community, we saw children forced out of their schools based solely on fear, in at least one case, their homes were shot at, and the home of a family with three boys living with hemophilia and HIV was burned to the ground after disclosing their HIV status.  These actions and the silence by the majority sent a clear message you cannot trust anyone with this information in an environment of fear and ignorance.

Since the show aired, there has been a firestorm setoff by an NFL player not standing for the National Anthem before a preseason football game, When asked why, he stated that he supports Black Lives Matter and that he did not feel that the country is living up to the ideals that it espouses it stands for, freedom and justice for all, So he is silently protesting the symbol of his country. Everyone starts by stating that it is his right but few outside of black commentators want to address what he really sees as the real problems in this country.  Most want to state or imply that it is disrespectful of veterans who fought and died for this country, even though he clearly stated that was not the reason for his protest during the National Anthem.  Others want to say that this is not the right venue for his protest and that because he is rich, he is not a representative of his stated cause.  All of these things are pivot points, to divert or distract us from having an uncomfortable conversation about race in this country. Much in the same way that homosexuals, IV drug users and sex workers were used to divert attention away from the real problem of HIV.  That we had a new virus in our country and it was going to affect the blood supply which would have an impact on thousands of people who received blood or blood products.  Once again, fear and ignorance and our uncomfortableness with the topic of race is allowing us to be distracted from the tangible effects skin color has on a person in our society.

Before the ESPN program or the NFL player protest, there was the distraction over the name "Black Lives Matter".  There seems to be a endless source of conversation over the name of this organization or movement.  Some wanted to imply that the name meant that only black lives matter which is a stretch of any interpretation of the words.  All the name was trying to do was to point out, that in their view, society did not think that black lives mattered. This name also was to serve as a rallying cry for the issue. And then Dallas happened, where a black person co-oped their message by shooting and killing police officers from a Black Lives Matter protest and a new catchphrase was made popular "Blue Lives Matter".  Both are real issues and both need to be addressed.  However we all might have been better served if they had used the phase "All Lives Matter". But this too can be a distraction keeping us from having a real discussion about race in the United States of America, and what actions we should be doing to find that more perfect union with liberty and justice for all.

Instead we hear voices saying, the black community needs to work on solving black on black crime, as if the majority of crimes perpetrated on whites are not committed by other whites. Or they ask the black community to identify the solution to these problems. It seems very strange to demand that people who might be considered victims to first make us aware of the problems and then come up with the solutions to the problems before any of the rest of us will pay any attention at all.  It is this kind of malignant neglect by the majority that keeps us in an environment where we talk past each other or worst, over the top of each other, which prevents us as a community from solving really difficult problems together.  Dr Martin Luther King Jr stated this far better that I ever could, so here is an excerpt from his "Letter from Birmingham Jail" that illuminates this point.

I MUST make two honest confessions to you, my Christian and Jewish brothers. First, I must confess that over the last few years, I have been gravely disappointed with the white moderate. I have almost reached the regrettable conclusion that the Negro's great stumbling block in the stride toward freedom is not the White Citizens Councillor or the Ku Klux Klanner, but the white moderate who is more devoted to order than to justice; who prefers a negative peace which is the absence of tension to a positive peace which is the presence of justice; who constantly says, "I agree with you in the goal you seek, but I can't agree with your methods of direct action"; who paternalistically feels that he can set the timetable for another man's freedom; who lives by the myth of time; and who constantly advises the Negro to wait until a "more convenient season." Shallow understanding from people of good will is more frustrating than absolute misunderstanding from people of ill will. Lukewarm acceptance is much more bewildering than outright rejection.

 In your statement you asserted that our actions, even though peaceful, must be condemned because they precipitate violence. But can this assertion be logically made? Isn't this like condemning the robbed man because his possession of money precipitated the evil act of robbery? Isn't this like condemning Socrates because his unswerving commitment to truth and his philosophical delvings precipitated the misguided popular mind to make him drink the hemlock? Isn't this like condemning Jesus because His unique God-consciousness and never-ceasing devotion to His will precipitated the evil act of crucifixion? We must come to see, as federal courts have consistently affirmed, that it is immoral to urge an individual to withdraw his efforts to gain his basic constitutional rights because the quest precipitates violence. Society must protect the robbed and punish the robber.

 I had also hoped that the white moderate would reject the myth of time. I received a letter this morning from a white brother in Texas which said, "All Christians know that the colored people will receive equal rights eventually, but is it possible that you are in too great of a religious hurry? It has taken Christianity almost 2000 years to accomplish what it has. The teachings of Christ take time to come to earth." All that is said here grows out of a tragic misconception of time. It is the strangely irrational notion that there is something in the very flow of time that will inevitably cure all ills. Actually, time is neutral. It can be used either destructively or constructively. I am coming to feel that the people of ill will have used time much more effectively than the people of good will. We will have to repent in this generation not merely for the vitriolic words and actions of the bad people but for the appalling silence of the good people. We must come to see that human progress never rolls in on wheels of inevitability. It comes through the tireless efforts and persistent work of men willing to be coworkers with God, and without this hard work time itself becomes an ally of the forces of social stagnation.

 YOU spoke of our activity in Birmingham as extreme. At first I was rather disappointed that fellow clergymen would see my nonviolent efforts as those of an extremist. I started thinking about the fact that I stand in the middle of two opposing forces in the Negro community. One is a force of complacency made up of Negroes who, as a result of long years of oppression, have been so completely drained of self-respect and a sense of "somebodyness" that they have adjusted to segregation, and, on the other hand, of a few Negroes in the middle class who, because of a degree of academic and economic security and because at points they profit by segregation, have unconsciously become insensitive to the problems of the masses. The other force is one of bitterness and hatred and comes perilously close to advocating violence. It is expressed in the various black nationalist groups that are springing up over the nation, the largest and best known being Elijah Muhammad's Muslim movement. This movement is nourished by the contemporary frustration over the continued existence of racial discrimination. It is made up of people who have lost faith in America, who have absolutely repudiated Christianity, and who have concluded that the white man is an incurable devil. I have tried to stand between these two forces, saying that we need not follow the do-nothingism of the complacent or the hatred and despair of the black nationalist. There is a more excellent way, of love and nonviolent protest. I'm grateful to God that, through the Negro church, the dimension of nonviolence entered our struggle. If this philosophy had not emerged, I am convinced that by now many streets of the South would be flowing with floods of blood. And I am further convinced that if our white brothers dismiss as "rabble-rousers" and "outside agitators" those of us who are working through the channels of nonviolent direct action and refuse to support our nonviolent efforts, millions of Negroes, out of frustration and despair, will seek solace and security in black nationalist ideologies, a development that will lead inevitably to a frightening racial nightmare.

There is no humor in thinking that this could just as well apply today as 50+ years ago.  What really seems to be the problem is that we as a society do not look at things from the other persons point of view and ask a very simple question, "If I were in their shoes, how would I feel?"  If we as members of the majority lose our ability to care about anyone in any minority groups, then we are in real trouble, because we have lost one of the pillars of our democratic republic, that being the majority must never impinge on the rights of the minority.  We should work to insure their rights and in so doing protect all of our rights.

It is also of note to me that the first white athlete to take up the National Anthem protest happen to be a woman who is openly gay,  This makes some sense to me because outside of race there are few groups more dismissed or demonized  than these two subgroups of our society.  Things have changed over the years for both of these groups, but not without protest and great pain.  It was not because the majority woke up one morning and said this is wrong we need to change.  It was the constant pressure on the majority by groups willing to protest which open our eyes to the fact that these were real people living and working around all of us, and they deserved to be treated as such with all of the rights the rest of us take for granted.

A final note, I did not come willingly or happily to supporting the National Anthem protest. My father served this country's armed forces for 22 1/2 years and was buried under its flag way too young. I would have proudly served if I had not been disqualified at birth. But, I have come to realize that for any protest to be effective, it has to disrupt our normal lives and cause us to pause, to think about what is being protested.  It is then up to us to become knowledgeable about the issue, and turn that knowledge into thoughts and deeds for a positive change to occur.  This, I hope my father would understand and appreciate, that I am taking a thoughtful and reasoned stand against injustice and inequality, especially because the protest made me uncomfortable and caused me to think about it,

When we get to the point where when I look at you, I see me and you look at me and see yourself, we can truly be one nation indivisible with liberty and justice for all.

Silent no more!                 

Ryan White: the face for thousands!

This past week was the 25 anniversary of the death of Ryan White at age 18.

This has caused me to reflect on what this young man, whom I never met, meant to me.  Early in the 1980's, I was working at Texas Instruments when the first cases of a new disorder was hitting the hemophilia community.  Until this point in time, I had always disclosed my hemophilia to close co-workers, not making a big deal about it.  Feeling that this gave me some protection in case of an accident where I could not speaking for myself, that others would know what to do and to share the information.  This had been a long pattern in my life, having never lived around extended family and moving every four years because of my father's military service. My early family life was dependent on friends and neighbors to fill in the role of an extended family. So it was natural that I would continue this practice in my early adulthood when my wife and I moved to Houston for a job, our neighbors, co-worker and friends would fill the role of extended family.

But then something curious happened, there were news articles and television programming, reporting the first six cases of a new mysterious illness affecting hemophiliacs.   It was affecting others as well  and the early groups were dubbed the 4H club by some.  These were homosexuals, hookers, Haitians and hemophiliacs.  The reports spread more fear that illumination about the new disorder, because they alway said that this new mysterious disease was always fatal and that no one knew how it was spread.  I took one look at this list and took steps to protect my wife because at least two member constituents of the 4H club were there because of sex.  I did not understand why Haitians were in the list but I did understand that I was in the other constituent group hemophiliac and that there was a risk to me.  In early 1983 we moved into our first new home and because of the news reports I was no longer sharing my medical information with my new neighbors because of how the general public and in some places state government agencies were responding to this new disease.  Ryan White a child with hemophilia was prevented from going to school and his neighbors ran the family out of Kokomo Indiana.  The Ray family had their home burned down after the three boys with hemophilia disclosed to their church minister that they had the newly identified disease.  These events had a chilling effect and drove my medical information, particular my hemophilia underground.  There was nothing I could do about the co-workers I had previously told but to respond to their questions by saying that I was being tested every six months, which by late 1985 was true.  By then I was positive for the newly named virus HIV.  Years later I would find out that stored samples of my blood showed that I became positive for the virus during a six week period in the summer of 1983 shortly after the birth of my son.

Because I was a young father and husband, I took the steps I felt were necessary to protect my family and my career by not disclosing my hemophilia to anyone other than medical professionals, and even they did not always respond positively to the information.  At the same time my hemophilia was being driven underground, Ryan White was fighting to get back into a classroom and I was cheering him on privately.  But the experience of the fear I felt from having to worry about how others would respond to my having hemophilia and HIV has changed me forever.  I am less open, I let far fewer people into my inner circle of friends and I am more guarded with people who do not understand hemophilia and HIV well.  It was not until I lost my chosen career and my son was of an age that I could explain things to him, so that he could protect himself against ignorance, that I finally got my voice back regarding my lifelong advocacy for hemophilia and the newly acquired HIV and how much I was thankful to Ryan White for filling the gap with his courage.  From my point of view at a time when thousands of us with hemophilia and HIV were unable or unwilling to stand up and speak for ourselves, Ryan White filled this role, maybe reluctantly but always bravely.  Twenty five years after his death, some of us are still here and we remember the venerable role he played on our behalf.

Some Myths Die Hard!

After spending what seem a lifetime educating people about bleeding disorders and hemophilia specifically, it was disheartening to waken on Monday March 16, 2014 to find my social network full of statements denouncing ABC Television's "Secrets and Lies" (S1, E4) for one of the characters referring to hemophilia as "a nasty byproduct of incest". This is a myth born out of hemophilia being in the Royal family's of Europe and Russia. Before genetics and mutations were even thought of or well understood medical practitioners attempted to explain the occurrence of hemophilia in a family as one of those disorders that might happens within a small pools of genetic material, intra-family marriages. In other words incest was a possible culprit for the occurrence of hemophilia in a family, this is the myth that will not die.  This false explanation so long ago does not stand up to the medical and scientific knowledge and understandings of genetics and mutations of genes that we have garnered from years of research and study in hemophilia.

When I say that I have spent a lifetime educating people about hemophilia, I am including medical professionals as a large component of that group.  As a child growing up in a military family we moved every four years of my life until age fifteen.  So there were always new doctors, nurses and of course because of their military service they were always coming and going where and when the service sent them, so I never really and any one doctor for more than four years if we were lucky.  Since hemophilia is a small subcategory of a specialist in Hematology/Oncology and the disorder rare only 1 in 10,000 births, most hematologist may never have treated a person with hemophilia before meeting their first patient with the disorder.  So mine and my parents knowledge was important to my care.   Since the age of twenty four I have been under the care of one of the federally funded Hemophilia Treatment Center.  Like most of these centers mine is connected to a medical school, so we get to see medical students and newly minted young doctors from time to time and I take every opportunity to pass on as much information as I can in the time I have with them.  I have even given several talks to Intro- to- BioTech classes at my alma mater and presentations to insurance executives on hemophilia.  So it is hard to understand why this particular myth continues to persist.

The reason I have an understanding of this myth is that it is one that my own Grandmother held until she was in her nineties.  Late in her life I attempted to connect myself to the two other known hemophiliacs in my family tree, her brothers.  Both of whom die from internal bleeding early in their lives, one at age four and another at age sixteen.  During one of our long conversations about them, she expressed regret she had not been a spinster school teacher there by stopping the passing on of these genes.  Wanting to understand the source of this regret because it would have meant she would never have had her five children and their children and their children was and is unfathomable to me.  All to prevent me from having hemophilia was a most disturbing thought, because for the most part I have truly enjoyed my life with all of the challenges I have faced.  As I explored this statement by her in more detail the real source of this regret, guilt and shame was this myth that she had learned as a small child, that her parents were told by a doctor that the most probable cause for her brothers having hemophilia was incest in the family tree.  We have to remember that this was a time before blood typing and human to human blood transfusions were commonplace so this type of leap in logic might be understandable in that historical context but not today.   I spent some time talking with her about my understanding of hemophilia today and almost all of the information was beyond her understanding of hemophilia.  She was amazed to hear about spontaneous mutation and that women can have hemophilia.  Another myth that doctor religiously repeat even today is that women cannot have hemophilia, to a women with hemophilia.  It might be genetically hard but it is not impossible or improbable.  

My Grandmother passed away five years ago at the age of 98, since then I have learned through DNA testing that my hemophilia is a single point mutation.  This is exactly what nature does though the natural selection process, it changes a gene to see what happens in the environment, either the organism will success or fail.  Today with a little bit of high cost medication people with hemophilia can succeed in their environment just fine.  Tomorrow the future looks even better.  In my last conversation with her I told her that I firmly believe that there will be a cure for hemophilia in my lifetime, I still believe that statement to be true. 

Finally, I have spent the last couple of days thinking about what I would like to see ABC Television do about this false and offensive statement by a character in the show  "Secrets and Lies".  As an educator on the subject I thought that this might be our best chance to kill this myth once and for all.  So I would hope that ABC Television offers the national organizations representing people with hemophilia the opportunity to create a PSA (Public Service Announcement) to be aired on the anniversary of this episode in the middle of National Hemophilia Awareness Month to dispel this myth once and for all.  This would be the best possible outcome. 

Religious Freedom or Employer Oppression?

Over the course of the weekend, I was immersed into the current argument being fostered by the Catholic Church and its Bishops.  This argument goes something like this, because the Affordable Care Act includes provisions that allow for women to access a wide range of birth control and church teachings are against birth control of any form, the Church as an employer of people of many faiths at their universities and hospitals should not be required to provide insurance that covers birth control in any form to these employees regardless of who has to pay for these treatments.

President Obama's administration had hope to side step this issue in the rule writing process by HHS saying that the institution of the Church would not be required to pay for these benefits, that these treatment would be paid for by the insurance provider and not the Church, of course this became problematic in the cases of self insuring institutions.  The administration has said that it would work with these entities to resolve this matter.  But the Bishops and the Church are currently expressing that they believe the administration may not necessarily be trustworthy on these points in the rules, not withstanding the fact that the administration is trying to resolve these problems working with the Church.  The Church is advancing the argument that this provision in the law impinges on the religious freedom of the Church and it's members to live their faith.  By this standard every Catholic in a position of power in any company should be working to prevent these legal medical treatments from being provided to any women irrespective of the woman's faith.

In the case where the Church is the employer in venues that are not religious by nature, such as universities and hospitals, the Bishops have failed to understand that religious freedom is an individual's right. The relationship between employer and employee is an inherently unequal one and to have the employer determine benefit based solely on the employer faith is oppressive to those employees that live by a different faith or no faith at all.  It is the nature of this relationship that should be used as the determining factor here and not in the favor of the employer.  There is a doctrine of fairness when entering into a contract in our legal system, that being the person writing the contract cannot be the sole beneficiary of items that maybe vague in the contract.  In this case the point that every employee of an organization under a religious umbrella regardless of the nature of the business will have to live by the religious precepts of the employer was never spelled out to prospective employee.  No one who is not a Catholic would knowing enter into a contract where the result is to live as a Catholic but this point was never articulated to the employee at the time they were hired by the Church.  But, this is exactly the point that the Bishops are arguing, their faith as employer trumps that of the employee.  

If we are to take the Catholic Church and the Bishops at face value with this argument, then what happens to those institutions that do not believe in medical care of any kind (and there are some), will they be allowed to tell their employees to pray for good health as their medical benefits?  Of course this might negatively impact the bottom line at those hospitals run by the Church which may claim not-for-profit status but are run as for-profit entities.  The advancement of this argument by the Catholic Church and the Bishops seem completely alien to a person raised and weened on the doctrine of social justice that has been espoused for decades by the Church.  If the Church really wanted to live by its doctrine then they would pay a living wage that includes the necessary salary for the employee to buy their own health insurance coverage regardless of health status. The only reason that heath insurance is part of employment benefit in the United States stems from an effort to minimize inflation after WWII.  If we are to take the  Church seriously about social justice then they would have called for a single payer system just as loudly as they are calling for religious freedom today.  Alas, all we heard was silence from the Church as 50 million Americans went without health insurance coverage because employer did not offer coverage or they were denied coverage because of preexisting conditions.  The Church should have been leading the demonstration against insurance companies and employer executing these practices and policy for us to take them seriously now regarding healthcare reform and living their faith.

MissingFactorIX: Solving the Constitutionality of Healthcare Reform...

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